Taking a Step towards Change: A Conversation about Stigmatizing Language

We have all had a bad day at work. Work-load, timelines, and frustration have driven us “crazy” and/or “mad”. Sometimes these frustrations or situations lead us to become “agitated” or “aggressive”.

Sometimes the mere act of running into someone can be defined as “crazy”: “It’s crazy running into you here!”

But sometimes (more often than not) these words and others are used to describe behaviours associated with dementia. Stigmatizing language and negative communication tends to be used in response to behaviours associated with dementia, which increases focus on the illness while reducing the person with dementia to a series of labels and symptoms.

On Tuesday July 26th, Alzheimer Society of Ontario partnered with brainXchange to host a think tank to discuss the use of stigmatizing language to describe behaviours associated with dementia and start the conversation about how we can better communicate using non-stigmatizing language. This was an excellent opportunity to bring together researchers, clinicians, and persons from the community to consider this very important issue. Many who joined the discussion were in Toronto that week attending the 2016 Alzheimer’s Association International Conference, including Dr. Dallas Seitz (Providence Care), Judith Wahl (Executive director of ACE) and David Kent (ORAC Board Member), amongst others.

Bringing together 20 people with a shared interest in this topic was all it took to get some excellent and constructive conversation started.

The think tank involved three parts:

Facilitated discussion and creation of case scenarios to consider the current and future state of this issue.

The creation of guiding principles and features for non-stigmatizing and patient-centered terminology.

A brainstorm of next steps and how we can work together to respond to this issue going forward.

All in all, the think tank was a great success because it represents one of many steps we can take towards changing the current state of communication and dementia. At the Alzheimer Society of Ontario, we want to continue the course of change and will be organizing more opportunities to discuss and consider this important topic in dementia going forward.